The lived experience of hearing loss - an individualised responsibility.

Objective: This study aimed to provide a conceptual model to understand what typifies the lived experience of hearing loss.

Design: A grounded theory informed study of adults with hearing loss (n = 46) who participated in individual interviews. The data were analysed in line with the constant comparative approach of grounded theory. A substantial patient and public engagement (PPIE) strategy underpinned decisions and processes throughout.

Study sample: Adults were recruited from age bands (16-29; 30-49;50-79 and 80 upwards) to provide different lived experience. We recruited individuals from across the UK including urban, sub-urban and rural communities and included a typical constituency of each location including black and minority ethnic participants. Our PPIE groups included adults often marginalised in research including South Asian community groups, adults in residential care and those with additional disabilities.

Results: We identified the consistent features of the lived experience with hearing loss, as the individualised responsibility that hearing loss confers. These are an individual auditory lifeworld; social comparison and social support; individual and patient-centred care and individual agency and capability.

Conclusions: This work provides new insights for those practising audiology and highlights the importance of building social support systems through implementation of family and peer support approaches.